Coronavirus FAQs

These are the answers to questions about COVID-19 posed by you. We will keep you up to date with any new information and advice as we get it.

Questions

If you suspect you have COVID-19

Speak with your ILD team first if you have symptoms of COVID-19.

Do not visit your specialist hospital or GP surgery.

If you are showing mild symptoms including a fever and cough, continue with your anti-fibrotics as prescribed and take paracetamol for your fever.

If your symptoms progress or you become increasingly breathless, call NHS 111 or visit the NHS 111 Coronavirus site.

What is the guidance for clinically extremely vulnerable people now?

The UK government are advising clinically extremely vulnerable people to stay at home as much as possible.

The Government will write to everyone on the shielded patient list in England advising them of these changes. Emails and text messages are being sent where they have those contact details. Guidance is also available on the GOV.UK website, here:

The new letters will replace any shielding letters clinically extremely vulnerable people may have received previously.

Can my partner/family be vaccinated at the same time as me?

Adult carers are included in Priority Group 6 (page 9 and 10), alongside adults aged 16 to 65 years in an at-risk group.

Adult carers are defined as 'Those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill'. We would encourage you to ask about a vaccine for your carer when you are called up for a vaccine appointment or talk to your medical provider about your personal circumstances.

How do I get food, medicine and essential supplies?

If you are clinically extremely vulnerable and you need support to access food, or you have other support needs, you will be able to request support from your local council to help you to stay at home as much as possible.

Councils are being given funding to provide support to those clinically extremely vulnerable people who need it. This can include help with shopping or requesting priority access to supermarket deliveries or signposting you to local support or be friending services.

It is important to ask for help with the delivery of food, medicines and essential services and supplies, and for support with your physical and mental health and wellbeing. As well as your council you can:

- Ask family, friends and neighbours to support you

- Register as a vulnerable person with a supermarket or provider of online services to receive priority support.

- Your usual support from health and social care organisations will continue as normal. Your health or social care provider will be asked to take additional precautions to make sure that you are protected. The advice for formal carers is included in the Home care provision.

Will I be vaccinated early because I have pulmonary fibrosis?

Clinically extremely vulnerable adults will get priority access to vaccination against COVID-19 before the general population and in line with the priority ordering set by the Joint Committee on Vaccination and Immunisation (JCVI).

You will be contacted again by the NHS with more information on when and how you will be invited to get the vaccine. Your local NHS will ensure that you can receive the vaccine as safely as possible, as well as any care and support needed.

This priority list is as follows, pulmonary fibrosis patients will be included in the clinically vulnerable category:

residents in a care home for older adults and their carers
all those 80 years of age and over and frontline health and social care workers
all those 75 years of age and over
all those 70 years of age and over and clinically extremely vulnerable individuals
all those 65 years of age and over
all individuals aged 16 years to 64 years with underlying health conditions which put them at higher risk of serious disease and mortality
all those 60 years of age and over
all those 55 years of age and over
all those 50 years of age and over

Our CEO, Louise Wright advises:

"Pulmonary Fibrosis is specifically included as one of the conditions that is in the 'clinically extremely vulnerable' group and every patient can get the vaccine."

Taken from COVID-19: the green book

APF will continue to work with government bodies and charities to ensure that pulmonary fibrosis patients remain a priority.

If you would like to speak to someone about the vaccination please get in touch with our support line.

I can’t get a delivery slot, but I need more food, what should I do?

If you urgently need access to food and are not able to get support from friends or family, then please contact your local council who will support you to access food. Find out what help you might be able to get from your local council at: https://www.gov.uk/coronavirus-local-help

Can I take the vaccine if I’m on immunosuppressants? If I can, will it work as well as it does for other people?

People on immunosuppressants will be offered the vaccine. But, at present, scientists are not sure whether the vaccines will trigger the necessary ‘immune response’ in patients with compromised immune systems.

Because of this, the government prioritisation guidelines state that the live-in partners of all immune suppressed people should be offered vaccination at the same time as their immune-supressed partners, even if they are younger.

The MHRA and scientists are currently examining available data and will be monitoring the situation carefully in future. Until there is a clear recommendation from government, people on immunosuppressants are advised to carefully assess the risks of mixing socially with other people.

Is there a connection between Covid-19 and fibrosis of the lungs?

Worldwide, there are several studies looking at the long-term outlook for patients who have had COVID-19. It’s not yet clear whether COVID-19 related pulmonary fibrosis gets worse over time. See our condition page on Covid-19 and pulmonary fibrosis for more information.

Will the vaccine make my PF worse?

It is highly unlikely that any of the vaccines with make pulmonary fibrosis worse. This is because vaccines cause an immune response but do not cause the cellular damage, which might lead to fibrosis.

The safety of all vaccines given in the UK will be checked carefully by the MHRA (Medicines and Healthcare Products Regulatory Authority), a world-renowned organisation.

What is the chance of getting covid-19 at the time I get my vaccine?

There is a slim chance of catching Covid-19 when you meet anybody else. But, since health care workers will be among the first to be vaccinated and give the high safety standards of hospitals, it is highly unlikely that you will get Covid-19 while going for vaccination. The risks of not being vaccinated against Covid-19 are far higher.

Can I say no to the vaccine initially and then take it later in the year after we know a bit more?

You can say ‘no’ to the vaccine but if you come back later in the year and ask to be vaccinated you may have to wait your turn.

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I haven’t heard about my next hospital appointment, what should I do?

It is vitally important that if you suspect or have a type of pulmonary fibrosis that you have regular check ups, including a lung function test. Many hospitals are working through a backlog of patients resulting from Covid-19 and reduced capacity because of stringent and necessary cleaning routines required between appointments.

No matter what your health is like we recommend you have your physical check up as soon as possible. Contact your ILD team by phone and email explaining your current health status and length of time since your last appointment.

What about my medical treatment?

All respiratory teams are busy but trying to catch up with patients regarding their treatment plans. We encourage you to be proactive and get in touch with your team over the phone.

Preventing others from infecting you

If you live with others, it’s hard to keep separate from them. But you will reduce your risk of getting COVID-19 if you:

Keep 2 metres (3 steps) away from other family members, sleep on your own and use separate towels and a separate bathroom, if possible
‍‍Keep shared spaces such as kitchens, bathrooms and sitting areas well-ventilated and minimise as much as possible the time other family members spend in these areas.‍
Clean any shared bathrooms every time they are used and try to use the kitchen at different times. Family cutlery and crockery should be washed well. Use a separate tea towel for the cutlery and crockery you use.‍
Get everybody in the house to wash their hands frequently (20 secs with soap), avoid touching their faces and clean frequently touched surfaces.

Note: Shielding is for your personal protection. It is your choice whether to follow the advice. Individuals who have less than six months to live or some others in special circumstances, could decide not to undertake shielding.

What about my oxygen supply?

There are no issues with the supply of oxygen. You may want to speak to your supplier for reassurance:

Air Liquide:

0808 143 9991 for London
0808 143 9992 for the north-west England
0808 143 9993 for east Midlands
0808 143 9999 for the south-west England

Baywater Healthcare covers Yorkshire and Humberside, westMidlands and Wales.

0800 373 580

BOC covers East and North-East England and Northern Ireland.

0800 136 603

Dolby Vivisol

0500 823 773 for the south of England.
0800 833 531 for Scotland

‍I'm feeling more breathless. Can I have an oxygen test?

Most hospitals are able to test do oxygen tests again. Waiting times for your test can be quite long so we recommend you book one as soon as possible.

Many hospitals have new safety measures so make sure you receive a letter confirming your appointment and what it is you are required to do or wear. If you are feeling more breathless than usual, we suggest you contact your ILD clinical nurse specialist and your GP.

Keep phoning until you have a response. There are many things you can do at home to help to improve breathlessness, such as using a handheld fan, breathing exercises and upper chest exercises. Read more on breathlessness.

How do I maintain social distancing?

We are aware that maintaining social distancing is complicated. In the meantime we recommend:

Avoid crowds and crowded places (like supermarket queues and busy streets)
If you touch hard surfaces such as gates, railings or benches outside your home use hand sanitiser immediately afterwards
Maintain high hygiene standards, washing your hands frequently and avoid touching your face
Walk at quiet times and in quiet green spaces

Read updated government advice on social distancing.

What happens if I am admitted to hospital?

We strongly recommend you complete our medical information form and make sure this is with you plus any recent letters from your ILD Teams if you are taken in to hospital. Do use the back of the form to add any additional information that you feel is helpful and specific to you.

It’s a good idea to think through what the first 12 or 24 hours might look like if you went to hospital. Questions to ask yourself or discuss with a loved one:

Once I know where I’m going to be admitted to, what will I need to take with me?
Who needs to know and how can I tell them?
Who can travel with me/take me?

We know that some people living with very advanced pulmonary fibrosis may choose to call their local hospice if they are already accessing support from the palliative care teams instead of 111. It’s a good idea to let family or friends know your wishes.

Should I wear a face mask?

Read the government’s latest guidance on face coverings.

At APF we are supportive of the use of face coverings. We strongly recommend wearing a face covering on public transport or when attending a hospital as a visitor or outpatient.

Remember that wearing a face covering is there to protect others and works best when social distancing too.

If you are unable to wear a facemask because it impacts your breathing, this is OK too. You can download the government’s exemption badges and printouts or order an APF lanyard.

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‍Scotland | Wales | Northern Ireland | England

What about medications and the coronavirus?

There are no issues with the supply of drugs to fulfil prescriptions. The companies producing the two anti-fibrotic drugs have assured the European IPD Federation (EU-IPFF) and APF that supplies will continue uninterrupted.

Medications for other conditions should be requested in the usual way and will be sent to your nominated pharmacy. Expect at least 24h before collection / delivery because pharmacies are working under pressure.

What can I do to help others?

Contact your support group organiser and offer to call members of your support group to ‘check in’ and stay in touch
Share any skills you have to help others stay in touch with friends and family online
Encourage people to get online and follow APF on social media
Share your tips on how you are keeping busy, teach others a skill or share a joke

This page was originally published on 8 March 2020, and was last updated on 10 February 2021. This advice is updated as new information becomes available.